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Updated: May 5, 2026
Symmetric Bihemispheric Postmortem Brain Cutting to Study Healthy and Pathological Brain Conditions in Humans
Published on: December 18, 2016
"It's My Wish, We Need This Program": Qualitative Reflections From People With High-Grade Brain Cancer Consenting to
Cassandra P Griffin1,2,3, Melissa A Carlson1,2,3, Marjorie M Walker1,2
1School of Public Health and Medicine, University of Newcastle, Newcastle, NSW, Australia.
Purpose:
Brain tissue donated in the postmortem setting is a driving resource for brain cancer research and a source of hope in the face of dismal survival rates. As demand for tissue increases, the need to understand the impact of these programs on prospective donors becomes paramount. Little is known about the experience of consenting to rapid autopsy after a terminal brain cancer diagnosis, and clinical teams favor caution when approaching patients for consent for fear of causing distress. Characterizing the human experience of consenting to postmortem brain donation will provide an evidence base for compassionate integration of brain donation consent into clinical pathways.
Methods:
We interviewed 21 prospective donors who had expressed interest or had consented to postmortem brain donation. A thematic analysis with narrative synthesis was conducted on the transcripts of the qualitative interviews.
Results:
Four themes were identified within the data: (1) Meaning, purpose, and donor expectations, (2) embracing the identity of a donor and integrating donation into personal narrative; (3) regaining control and defining legacy; and (4) the role of stoicism and humor in protecting emotional well-being and family relationships during donor discussions.
Conclusion:
The sentiments expressed in the data indicate an overwhelmingly positive impact associated with consenting to brain donation. Consenting to a postmortem brain donation program can instill a sense of purpose and meaning while restoring a sense of control for those facing mortality. These data indicate that the prevailing caution and reluctance in consenting a patient to brain donation may be misplaced, preventing patients and their families from engaging with a program that can provide an invaluable source of hope, empowerment, and legacy.
Insights
Consenting to postmortem brain donation offers hope and purpose for cancer patients. This process can restore a sense of control and legacy, challenging clinical reluctance to discuss donation options.
Area of Science:
- Neuroscience
- Oncology
- Medical Ethics
Background:
- Postmortem brain tissue is crucial for brain cancer research.
- Increasing demand for tissue necessitates understanding donor experiences.
- Clinical teams often hesitate to approach patients for brain donation consent due to fear of causing distress.
Purpose of the Study:
- To characterize the human experience of consenting to postmortem brain donation.
- To provide an evidence base for integrating brain donation consent into clinical pathways.
- To understand the impact of brain donation programs on prospective donors.
Main Methods:
- Qualitative interviews were conducted with 21 prospective donors.
- Thematic analysis with narrative synthesis was applied to interview transcripts.
Main Results:
- Four key themes emerged: meaning/purpose, donor identity, regaining control/legacy, and stoicism/humor.
- Donors found meaning and purpose in their decision.
- The process allowed donors to regain control and define their legacy.
Conclusions:
- Consenting to postmortem brain donation has an overwhelmingly positive impact.
- It can instill purpose, meaning, and a sense of control for those facing mortality.
- Clinical reluctance may prevent patients from accessing a source of hope, empowerment, and legacy.
